Tuesday, October 8, 2013

October is Down Syndrome Awareness Month, as a parent of a child with DS I thought it would be fun to share some fact about Down syndrome. In this post I wanted to be more informative and help people understand having a child with Down syndrome is not the end of the world, in fact it’s an awesome journey only a lucky few get to experience. People with Down syndrome are more like you and me than you may think. I know a lot of these facts can be goggled but I thought I would be nice and pile them all in one place. I know there are tons of facts but I came up with 10. Alright let the facts commence!

FACT 1: The medical treatment of people with Down syndrome has advanced remarkably over the years. Because of this, the lifespan of people with Down syndrome has also increased. In 1929, the average lifespan of a person with Down syndrome was just 9 years old. In 1983 it rose to 25. Today, people with Down Syndrome are living well into their 60’s and will likely continue to rise with the advancement in medical care.

FACTS 2: 90 % of pregnancies with prenatal diagnoses of Ds are aborted.
(If I could talk to one of those parents I would tell them, yes, having a child with Ds can be very difficult. Yes, it will change your life in ways both good and bad. But it's worth it.)

FACT 3: Some scientists believe that people with Down syndrome may hold the key to a new generation of cancer drugs. Why? Solid tumor cancers are very rare in people with Down syndrome. It has been found that one of the genes on chromosome 21 encodes a protein that blocks a factor needed for blood vessel growth. They found that this protein, DSCR1, is overproduced in people with Down syndrome.

FACT 4: There is a baby born every 12 seconds in the USA; the CDC estimated the frequency of Down Syndrome in the United States at about 1 in 691 births. That's 6000 each year out of the 4 million babies born total each year.. It is one of the most common congenital disorders, occurring in all races, ethnic groups, and nationality.Some more #’s did you know about 38% of Americans know someone with Down syndrome and there are more than 400,000 people living with Down syndrome in the United States. There are about 316 Million people in the USA that means about 120 million people know someone with Down syndrome! So as you can tell by the numbers I’m pretty lucky to be one if the chosen.

FACT 5: The appearance of children with Down syndrome may slightly differ from other children. They may have some unique medical problems, and will likely have some degree of intellectual disability. However, the severities of these problems vary tremendously from child to child. There are no "levels" of Down syndrome. A person either has Down syndrome or they don't. It can just affect people in different ways.

FACT 6: Federal Register on January 28, 2013. “We are replacing the term “mental retardation” with “intellectual disability” in our Listing of Impairments (listings) that we use to evaluate claims involving mental disorders in adults and children under titles II and XVI of the Social Security Act and in other appropriate sections of our rules. This change reflects the widespread adoption of the term “intellectual disability” by Congress, government agencies, and various public and private organizations.”
In my book this is awesome news, there is something so harsh with the word “retarded”. As a mom hearing your child classified as “intellectual disability” is a much easier to hear than the “old term”.

FACT 7: Down syndrome is not a disease; it is a genetic condition. You can't "catch" Down syndrome. A baby has Down syndrome the minute the sperm meets the egg. It's not something a woman can develop during pregnancy because it is present at the moment of conception; as soon as the cells divide. The most common type of Down syndrome is Trisomy 21 or T21; it occurs because of incorrect chromosome division during meiosis. It results in the fertilized egg having three copies of the 21st chromosomes instead of two. There are three types of Down syndrome: Trisomy 21 accounts for 95% of cases, Translocation accounts for about 4% and Mosaics accounts for about 1%.
This fact is one I find myself “spouting off” a lot. People seem to think I didn’t take care of myself or I did something to “cause” this to my baby since I had her when I was “so young”. Well I didn’t, it was something I had no control over, it was my selected journey, and I am ok with that.

FACT 8: While the age of the mother can be a factor, 80% of people with Down syndrome are born to parents under the age of 35 because younger women have babies. (If anyone is wondering I was 29 when I had Hannah.

FACT 9: A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

FACT 10: Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. If you don’t know someone with Down syndrome you are missing out. They would be your best friend and love you unconditionally.

Now you know the facts, I would like to tell you a little about how Hannah is just like any “typical kid”. She loves school, the computer, her iPad, books, puzzles, games, the color pink and anything to do with princesses. She has a smile that lights up a room and a laugh that's contagious. She gives the best hugs. She can go from sweet as pie to as grumpy as a bear in 5 seconds flat. Yep I said it! She isn’t away a sweet, happy kid. Children with DS have the same range of emotions as anyone else, people often say “she is always so happy, always has a smile on her face”...wrong!!!! She gets just as mad or sad as you or I might get. Maybe even a little more mad or frustrated then a typical person. Sometimes things are little harder for her, but that’s ok , there are something’s that are hard for me to learn. She has her own personally, she has her own way of doing things, and she has a strong will, she is my daughter and I wouldn't change one single thing about her. People with Down syndrome are capable, valuable, loving and unique individuals!

Tuesday, October 1, 2013

Today is October 1st… So what does that mean? Well
it the 1st day of Down Syndrome Awareness month!!!! So I thought I
would start my month off with a quick post and let everyone know what I think
Down Syndrome means and who Hannah is because of the down syndrome. No it doesn’t
define her; however that extra chromosome does make her the person she is!

Dynamic Hannah
has a Dynamic personality.

OutgoingHannah is outgoing.

WonderfulHannah is a wonderful little
girl.

NoteworthyHannah is worthy of attention.

SassyHannah is
a sassy little lady ( I’m going to have my hands full in a few more years!)

YearningHannah has a deep desire to please, she is
always willing to help!

NeatHannah
is a neat kid

Determined Hannah is determined to fit in… be
accepted!

RelentlessWhen Hannah has her mind made up there is no
way anyone will change it.

Saturday, September 21, 2013

So 5 days ago Hannah put her full left hand on a hot burner on
the stove at my mom’s house! She sustained 2nd degree burns on her
hand… I have never been so scared in my life… we have managed to stay out of
the emergency room (except once for croup) for the last 6.5 years. After 45
minutes of crying and 2.5 hrs in the ER ,she was fine. Hannah is a very curious
little girl. She likes to help you with everything you do even if it might be
something you know she should be helping with. Monday night she was not interested
in helping Mom cook she was interested in her playing a game with her. I truly think
she has learned a valuable lesson from this injury: Don’t touch the hot stove,
it will hurt! Keeping clean and dry has been a challenge but I think we are
doing a pretty good job, but I do have to say I really hope we NEVER need a
cast…. Never a dull moment in this house!

Wednesday, August 28, 2013

The 1st week of school was pretty good, a few aggressive actions toward her peers but nothing like we were seeing last year. This week (so far) has been the best 3 days she has had in 2 years. Her behavior is improving greatly. Her teacher this is very fair and very calm. It’s making a huge difference. There is no yelling in the classroom, you can tell she is building her up, not tearing her down.

She comes home happy and she loves to talk about her day. Seeing the way she is acting so far this year about school shows me last year was a horrible experience for her. One she did not want to talk about. I already have an IEP (individual education plan) meeting next week to talk with all staff dealing with Hannah on a weekly basis, so we are all the same page and we are doing what is best for her…. This school is really impressing me. (I know it’s been a week and 3 days, I am not letting my guard down.) However they have done more for Hannah in a week and 3 days than any other school she has been in since preschool. They truly seem to care about Hannah, the way you would expect a special needs teacher to care about her students. The way we though the teacher care about her last year. For the first time in a long time I feel like I have finally made a good decision for Hannah. Making decisions for her was becoming very stressful for me …. I was starting to feel “mommy guilt” regardless of the decision I had to make. I felt like I was always failing her, and it was making me very sad. (all the mommies out there know how awful mommy guilt feels) I know I could have never known any of this was going to happen but I still feel like I should have pushed more for her last year, to be placed where I wanted her, but I let them talk me into the school closes to us. I know there are so many “what if’s”, “could haves” and “should haves” but I am starting to see they are going to be abig part of me getting pass this mess and learning from them. I am learning to trust that “mommy gut” so many other wiser mommies’ have told me about. Parenthood doesn’t come with instruction, we learn as we go, but when you have a child with special needs it make the “learning as you go” part that much scarier!!! Looking back just 6 years ago and how naive I was, She was such an easy baby… she was so healthy…. So typical-ish …. I honestly thought it would be no different raising her than it would be to raise a child without special needs…. I am learning VERY quickly I was VERY wrong. There are small details parents of typical children never have to deal with…I am in no way complaining…. I am very thankful for all the lord has a loud me to experience good and bad… it all will make me a better mommy and a better me!!!Liz

Sunday, August 18, 2013

As our summer comes to a close we forge ahead in to a new environment,
new school, new class, new teacher and new year hopefully optimistic. This
summer was also a time of renewal. I took off a third of the summer to work on
me, to work through some of the stress and sadness I felt after we started the
criminal portion of this journey. Medically the stress of this situation sent my
blood pressure to dangerously high levels. After bring it down and centering
myself I was able to take some time to spend with Hannah while I was off. A mini
stay-cation on the beach and countless hours in the pool was just what the
doctor ordered and I was able to return to work. In the month of July Hannah
was a lucky little lady.. she spent countless hours at Nana’s house and had
tons of sleepovers, which allowed me to ease back in to working FT and managing
a household again. Although this was and still is a craptastic situation, we
are finding positives hidden around every corner. The district has been trying
to improve things, However there is a lot of work to be done.

I took Hannah to
meet her new teacher this past Friday and she seemed to really enjoy it there,
she is showing excitement in returning to school and meeting new friends.I am so glad last year’s experience hasn’t ruined school for
her. When we arrived at the new school she was excited to head
inside. Once inside she introduced herself and let everyone know she was in 1st
grade. (It was very cute and I think she won a few hearts right off the bat.)
Once we were instructed where to meet for new student orientation she lead that
way, with now fear I might add. She followed the “paw print” to the café and
took a seat. She sat through a 20 minute introduction and speech from the
principal with grace…. It was like I had the old Hannah back, almost made me
cry. Once the “talking part” was over they called each teachers name and let us
head to the classroom. Once in the classroom Hannah headed straight to the desk
with her name on it. She was very proud to sit in “her” seat. She introduced
herself once again to everyone in the room and asked for everyone’s name! (she
cracks me up) She asked questions and looked around and said “ Mom I like it
here! For me it meant the world. Making decisions is not a strong suit of mine,
(I second guess myself all the time when it comes to what's best for Hannah,) so
when she approved it made by day. I was
very impressed with the organizing of the classroom Hannah will be in and my 1st
impression of the teacher was a good one. I spoke to her for about 30 minutes
on the phone Friday morning filling her in on all the drama, we also spoke
about some of the thing I wanted in place for Hannah. By the time we arrived to
visit that afternoon she had examples to show me. I have to say it was very
refreshing to finally have a teacher who follows through.

As time passes the hurt and disappointment is
fading a bit however I truly don’t think I will ever fully get over it. I will spend the rest of my life trying to
make school a better and safer place for our kids. If we don’t stand up for our
kids, who will. I have so many ideas, so many suggestions that it’s hard to
write them down fast enough. I’ve always been told the squeaky wheel gets the
oil, so I think if I keep talking maybe; just maybe I can help make a
difference. At the beginning of this journey,
I couldn’t get past the question “ why did this happen to my daughter?” But as
time is passing I am starting slowly see maybe it’s my job to make the district
make changes, improve processes ,create new training programs and educate our
educators on how to handle our child. A child with a disability is able to achieve
the same things as typical children. They are just able as anyone else as long
as the people teaching them are willing to teach them way they learn, not the
way the teacher wants to teach. The days of teaching out of a book and expecting
every child to just get it, is gone! There needs to me more flexibility in
teaching styles to accommodate every single child in the district. We are now
only hours away from a new school year and a though I feel pretty good about
it, I still have to admit I am a little scared.

Monday, April 15, 2013

With all the stress, and all the
serious conversations I've had to have in the last 3 weeks, I thought
I would lighten it up a bit. Here are thirty one things to think about! Hope at
least one makes you smile! :)

1. I think part of
a best friend's job should be to immediately clear your computer history if you
die.

2. Nothing sucks more than that moment during an
argument when you realize you're wrong.

3. I totally take back all those times I didn't
want to nap when I was younger.

4. There is great need for a sarcasm font.

5. How the hell are you supposed to fold a
fitted sheet?

6. Was learning cursive really necessary?

7. Map Quest really needs to start their
directions on #5. I'm pretty sure I know how to get out of my
neighborhood. 8. I can't remember
the last time I wasn't at least kind of tired.

9. Bad decisions make good stories.

10. You never know when it will strike, but
there comes a moment at work when you know that you just aren't going to do
anything productive for the rest of the day.

11. Can we all just agree to ignore whatever
comes after Blue Ray? I don't want to have to restart my
collection...again. 12. "Do not
machine wash or tumble dry" means I will never wash this - ever.

13. I hate when I just miss a call by the last
ring, but when I immediately call back, it rings nine times and goes to voice
mail. What did you do after I didn't answer? Drop the phone and run away? 14. I think the freezer deserves a light as
well.

15. I disagree with Kay Jewelers. I would bet on
any given Friday or Saturday night more kisses begin with Miller Lite than
Kay.

16. Sometimes, I'll watch a movie that I watched
when I was younger and suddenly realize I had no idea what the heck was going on
when I first saw it.

17. I would rather try to carry 10 plastic
grocery bags in each hand than take 2 trips to bring my groceries in.

18. The only time I look forward to a red light
is when I'm trying to finish a text.

19. I have a hard time deciphering the fine line
between boredom and hunger.

20. How many times is it appropriate to say
"What?" before you just nod and smile because you still didn't hear
or understand a word they said?

21. I love the sense of camaraderie when an
entire line of cars team up to prevent a jerk from cutting in at the front.
Stay strong, brothers and sisters!

22. Shirts get dirty. Underwear get dirty.
Jeans? Jeans never get dirty, and you can wear them forever.

23. Sometimes I'll look down at my phone 3
consecutive times and still not know what time it is.

24. Even under ideal conditions people have
trouble locating their car keys in a pocket, finding their cell phone, and
Pinning the Tail on the Donkey - but I'll bet everyone can find and push the
snooze button from 3 feet away, in about 1.7 seconds, eyes closed, first time,
every time! 25. My GPS says "Estimated Arrival
Time." I see "Time to Beat."

26. Whenever someone says "I'm not book
smart, but I'm street smart", all I hear is "I'm not real smart, but
I'm imaginary smart".

27. My keyboard needs a removable crumb tray
like my toaster.

28. What would happen if I hired two private
investigators to follow each other?

29. I wish it were appropriate to say to a
complete stranger, "Excuse me, would you like me to show you how to
discipline your child?"

30. I never understood why the Lions and Cowboys
always get to play on Thanksgiving. Shouldn't the Patriots play the Redskins,
and then steal their stadium afterwords?

31. Double-Stuffed Oreos should just be called
Oreos, and regular Oreos should be called Diet Oreos.

Friday, March 22, 2013

The awful woman who hurt my Hannah has been arrested, is in jail and awaiting trial.... my thoughts on this are simple... I'm glad....I'm glad she is in jail, I am glad she will not be able to work with children ever again. I have now entered the stage of being so angry I almost can't contain it. How dare you put your hands on my daughter... how dare you look me in the eye and tell me you want to help her, how dare you. I can hardly even look at the mug shot without feeling so much anger. I would like 5 minutes with her.....just so she would have to look me in the face. I would love to ask her what she was thinking...what made her think she had any right to pull Hannah's hair or kick her or tape her hands to teach her how it feels... honestly if you are that miserable in your job find another one... these are defenseless children with disabilities... these are kids who can not protect themselves...these are kids who trusted you... parents who trusted you...... how dare you hurt them... I am really angry. This has caused us so much pain... I'm angry that she has put me in a very uncomfortable position...I am angry, I now have to deal with the media, get a lawyer, talk to a ton of law enforcement offices... people I probably would have never spoken too... I'm angry I have to hear what she did to my daughter every time I watch the news... how dare you put my family through this. This has just begun... this horrible nightmare of a situation will be haunting us for months... I will have to hear what she did to Hannah over and over again. I am also so sad.. I am sad teachers hurt kids..I'm sad it is even possible for a child to experience abuse by anyone...I'm sad Hannah had to go through this.. I'm sad I didn't know. I know things happen for a reason... I know I will lose sleep trying to find the reason..I know we will all come out of this smarter and stronger but I still don't want to be dealing with this. I have done one phone interview with a local news channel, I sent an email statement to another, I really don't need my face and name all over the news. This is truly going to be a day by day process, and I know there will be days I am a lot happier than I am right now and I know there will be days I am a lot sadder and a lot angrier. I will just trust god and pray for strength and guidance. Again I would like to say thanks to you all for the support we have received. It's good to know there are still more good people than bad! Bless you all! Liz

Tuesday, March 19, 2013

My goal for the next few blog was going
to about accepting the difference we all have, about how special each child is
and what each one has to offer, regardless of ability, unfortunately I am going
to blog about something so devastating that I am still in disbelief it really
has happened. I was contacted by Children protective services Monday night, they
told me my sweet Hannah was a victim of abuse, not by me, but by her teacher at
school. This morning I met with law enforcement and they informed me of a
report filed against the teacher which involved her taping my daughters hands
together at the wrist in order to keep her from hitting other students, hitting
her in the face with a book because she wouldn't keep the books out of her
mouth, kicking her, pulling her hair because she wanted to let Hannah know how
it felt, and months of verbal abuse, such as yelling at Hannah and calling her
name as well as degrading her and other students in the class. The physical
abuse has been happening for a few weeks and the verbal abuse has been
happening for months. Typing this almost feels wrong. I am feeling so betrayed. I feel so angry. I feel
so sad that this could happen to my child. Sending your child to school shouldn't be scary, you shouldn't have to worry that the person in charge of them 6 hrs a
day 5 days week would hurt them. No matter how hard Hannah can be to deal with
at times you NEVER have the right to put your hands on my child (or ANY child) to
harm them. The Clearwater police dept has taken the case, they have interviewed
all who might have seen something and everyone else involved, the teacher, the
principal. The officer told me that he feels very strongly that a crime against
Hannah was committed . I was told they have a strong case even without physical
signs of abuse, I have a feeling this is going to take a little time to get the
situation resolved, but the teacher has been removed from the school until the
investigation is completed, but it’s unclear at this moment if she will be
terminated. I have kept Hannah home today at the advise of law enforcement, needless to say they didn't have to tell me twice. I plan on keeping her home tomorrow as well, I plan on calling the school tomorrow and speak to the principal in
hope to get some answers to what will happen on their end. I will be voicing my
option that she is terminated for hurting a child, not to mention a child with
special needs. I am beginning to feel that if she isn't in the care of someone I
am related to she is not safe. We have just had zero luck with the public
school system. Prior to this being brought to light, I have been doing a lot of
soul searching, the working mom thing isn't something I am happy with at this point.
With all the sickness we have been dealing with and with some of the behavior issues
we are having. I feel that Hannah is my number one job and making sure she is safe
and taken care of is my soul purpose. Working 40 hrs a week (I feel) is preventing me from doing my "real" job. However the financial burden it would cause us
for me to quit working would be anti-productive for her well being. Because supporting her needs would be more difficult
without my income. I want nothing more than to be able to be a stay at home mom
and be with her 24/7. Anyone who knows me knows Hannah is my whole world, she
is the reason I breathe, she is a gift from god and she is cherished. If nothing else I have learned that in this
day in age NO ONE can be trusted. People now days have not regard for anyone
but themselves. I have a lot to deal with in the next few weeks. Something things
I have already give to god and I have been praying for his guidance since this situation
was brought to my attention. Without his guidance I know I would have already
done 101 stupid things to make the situation worse and make me look just as bad
as the teacher looks. Cameras in classroom is a cause I was 100 % in support of
but now you will all here me advocate that a lot more. Thanks to everyone who
has already commented on the early status on FB. I am so blessed to have such
supportive friends.

Thursday, March 14, 2013

In honor of World Down Syndrome day 3.21.13, I thought I would share one of the 1st things I found when researching DS while I was pregnant with Hannah. Although I wasn't 100 % sure Hannah would have Down Syndrome I wanted to learn as much as I could. I remember a single tear running down my face while reading it and later found it to be so very true, but so beautiful.

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Saturday, January 26, 2013

Normally I write about Hannah, but the last 2 weeks for our family has been a bit on the roller coaster ride. My dad was scheduled for a biopsy last Wednesday, he had one back in July and all when smoothly, however this time was much different. There were complication and his lung was punctured, which in turn made it collapse, the biopsy was done because there was a large mass on his left lung.... seen on an X-ray that in itself was scary. The worry Dad might have cancer was so devastating...then when we spent 9 days in the hospital with daddy was almost more than Mom and I could handle. Healing for daddy when slow, days passed one by one and we just waited. This past Wednesday we received the results from the biopsy.... that day was one of the most stressful days of waiting in my whole life. About 11am we received the wonderful news the mass was NOT cancer! It felt as though the world was lifted off my shoulder. I spend 7 days praying as hard as could, asking the lord to please heal dad and we would receive good news regarding the biopsy. I spend most nights up thinking about all the things daddy has done for me, all the special times we had shared.... he is the first man i ever loved, he is the one who let me sleep on his belly, taught me to ride a bike , always tells me how proud he is of me , taught me to be a strong women who speaks her mind. He gave me away on my wedding day... I was praying he would be around to teach Hannah some of the things he taught me! I have always been a daddy's girl and I wasn't ready to give that up! As I reached out to FB, I was so humbled by all the wonderful friends/ family I have who prayed for daddy, who offered well wishes. I truly felt the lord presents and healing for daddy. I know I have soo many wonderful people to thank, I truly know it was because of all those prayer daddy is ok! I am just looking forward to many more memories and special moments for our family and especially Hannah and her Poppy!

Tuesday, January 1, 2013

As we say goodbye to 2012… we look forward to the new year, 2013… we look forward with a renewed hope , a strong desire thing will get
better or stay good, the issues from the past year slowly fade to memory and we
look forward to new and exciting experiences…. I am hopefully optimistic for growth and maturity…
things with behavior will get better; we will start to understand how important
it is to listen to adults so we will stay safe. The past few months have been pretty good. Things seem to be turning around… Thanksgiving and Christmas were
wonderful. We did a lot of stuff as a family and we learned some new things. Hannah turned 6! We had a party....with a bounce house and friends, cake and gifts. We celebrated for 6 days... since we were off school for thanksgiving break! We did a lot of fun things. As Christmas got closer Hannah got very excited … we looked at a lot of Christmas lights. We decorated 3 Christmas trees… we
baked a ton of cookies and we had a lot of fun, very special moments I will
always cherish. Hannah also received an academic award from school. She is excelling
full speed with all the academics. I am very proud how smart she is and how
hard she works on her school work. There is so much for us to be thankful for,
we tend to lose sight of the good stuff sometimes, because the “bad” stuff clouds our vision. I think this year we
will focus on the good things and we will learn to deal with the “bad” with
less stress. Hope everyone has a wonderful 2013!

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